skip to main |
skip to sidebar
Today was a great day. We went to a historical 19th century farm near our home and Elijah seemed to really enjoy himself. I know that he can’t really understand what was going on (just yet), but he seemed to enjoy being out with us. He looked at the sheep, snuggled with his mommy, and fell asleep in his stroller while we took a walk beside the Mississippi. He didn’t fuss once and we all had a great time. It’s one of those days that left us feeling relaxed and invigorated all at once. It really was a wonderful day.
Speaking of wonderful, our little Elijah seems to be making a lot of improvements lately. Yesterday he started to roll around on the floor and he did it for me again today. I was trying to change his diaper and he rolled away from me...all the way over. I don’t think he’s making the connection that he’s able to get himself where he wants, but movement of any kind is fantastic! The more he rolls, the more his brain will heal, and the more he will figure out what he is doing. It’s pretty exciting. He also seems to be making some attempt to crawl while he is in a crawling stance. He’s tries to move his back legs, but doesn’t move his arms and therefore plows directly into the floor. His arms have been developing slower than his legs, so this is to be expected. He continues to move his arms more and keeps gaining strength, so we keep hoping that he’ll catch up.
Our strong little guy is such a joy and seems to becoming more and more aware of the world around him each day. His smiles simply melt my heart. These last few weeks, though, Elijah has been a little grumpier because his “eye teeth” are coming in. I can’t wait until those come in, because he’s been pretty miserable.
Anyway, it’s time to sleep. I just thought I was overdue for an Elijah update. He’s doing great, thanks for the continued prayers.
I thought I’d give you all an update on the nutrition debate...we’ve decided that I will continue breastfeeding for at least the first year. Our pediatrician isn’t concerned about Elijah’s weight gain at all, so that’s good news. Personally, I think that breastfeeding is the best thing I can do for Elijah right now and I’ll do it for as long as he needs. I know what a blessing it is that I am able to feed him in this way. I think back to when he was born and remember the doubt in the eyes of the doctors when they learned of my desire to breastfeed. Now, it is ten months later and we’re still going strong. I also know that there are women who, for completely legitimate reasons, are unable to nurse their babies (I personally know three) and I know that’s okay too. But, I don’t want to give it up if I know that Elijah will benefit from it, especially since it was so hard to get started in the first place. (Oh, and sorry to all you guys out there about all the breastfeeding talk:))
In my last post, I mentioned how I had been a bit “down in the dumps” and the following is something I wrote during that time; a time in which I was thinking things would never get better, that Elijah was perhaps having seizures, and life seemed ultra-gloomy. I thought about just erasing this post and banishing it to the trash can, but on second thought decided to share it with you all. Why I didn’t post it at the time, I’m not sure. Maybe I got too busy or perhaps I thought I was being too negative and felt the need to censure myself. It was probably a mixture of both.
But the fact is, I am human and simply cannot be optimistic all of the time. Besides, this is what I feel like sometimes. Most of the time, I am extremely happy and I feel so grateful that Elijah is doing so well. And other times, well...sometimes you can’t help but grieve over what you have lost and more importantly what Elijah has lost. It’s just not fair, but no one ever said it would be.
To be clear, I’m back to my old optimistic self again, so please don’t think this isn’t how I’m currently feeling. Anyway, this is what I wrote...
***
It really is true...you never think it’ll happen to you. When I looked to the future, I never pictured myself being a parent to a “special needs” child. It’s not exactly what you would hope for your child. Not that this undermines the love and acceptance we have for Elijah...to us, he really is perfect (sometimes I wonder if I love him more because of all he’s been through!). But, no parent wants to think that things are going to be more difficult for their child, that they’ll possibly be teased, that they’ll be undervalued by society.
I’m sick of the sympathetic looks I get. I can almost read the thought processes of people when I tell them of Elijah’s difficulties. “Oh, how sad,” they think. “Wow, I’m glad I’m not her, I’m glad it’s not my child.” Lest you think I’m judging these people, please realize that I would have been thinking the exact same thing had the roles been reversed. And, please, when you read this, don’t think I’m talking about you. I’ve found that those who read these journals have been nothing but kind and considerate. I’m speaking more of the random stranger, whom for one reason or another, I must explain Elijah’s story to.
I guess I’ve been feeling a bit down lately. I’m sure you’ve gathered as much from the preceding two paragraphs. Please accept my need to vent. Don’t tell me that everything is going to be okay. Don’t tell me how I’m supposed to feel, but rather listen. All I ask is that you try to understand what our little family is going through. I ask that you kiss your children and never take for granted those typical developmental steps that most children make without much effort. Don’t complain about how your child is into everything or that they never shut-up and realize that I’d love to have the same complaints.
I think about how positive I’ve been through all of this. How I’ve tried so hard to believe that everything will be okay. I’m an optimist and I really like that about myself, but I think I sometimes set myself up for disappointment. I’d give my life to make Elijah whole, but I know that’s not the option I have to choose. Rather, it’s my job to not sell him out, to not give up on him, to give him every possible opportunity to be the absolute best that he can be. It’s my job to believe he can be anything, even when others tell us it’s not possible.
Elijah’s progress is nothing short of amazing. He is sitting and doing very well, but he continues to be behind. Intuitively I know it doesn’t really matter. I know that he’ll get there eventually, but it’s hard not to ask the “what ifs”. Elijah isn’t putting things into his mouth on a consistent basis. He isn’t babbling. He isn’t creeping or crawling. He isn’t pulling to stand. He isn’t attempting to walk. He isn’t picking things up. Normally, I try desperately not to focus on the things he isn’t doing, but rather the things that he is. I suppose that would be possible if I could seclude myself into a cave and never see another baby or child...or another adult, for that matter. The abilities of other humans reminds me of what Elijah seems unable to do...at least right now.
It’s hard because Elijah should be able to feed himself at this point. He should be putting small foods into his mouth. Anything he has ever eaten, someone has put in his mouth. I only say this because it’s hard not to wonder if he’ll ever be able to do it. While I’ll do whatever he needs of me, I don’t want him to always be so dependent on his parents. How I long to hear Elijah say “mama” or “dada,” even if he has no idea what he is saying. I ache to have him wrap his arms around me and give me a hug or a kiss. He loves me, this I know, but it’d be nice if he were able to show it a bit more.
I only share these things because I hope desperately that you will all pray for him and for his development. I am a firm believer in the effectiveness of prayer. It would be sad if I didn’t believe after God has shown us time and again that He listens. I know that God cares about us and Elijah. God is looking out for us and that’s that only thing that gets us through all this. I know that one day Elijah will be healed completely. I hope and pray that his healing occurs in this lifetime, but I also realize that for some reason, I may have to wait longer. Either way, I know that God listens, feels my frustrations, and wants the best for all of us...whatever that may be. I just need to get on board with God and everything else will follow.
***
If you’d like to see a really cute video of a giggly, “squealy” Elijah...Click here
Brace yourselves...it’s a long one. This is essentially two posts in one. You were warned. :)
Ten Month Little Dude
These months keep going by so quickly! It’s hard for me to wrap my mind around the fact that Elijah is now ten months old (as of yesterday) and is quickly approaching that one year mark....now, that’s going to be hard to imagine!
“Crawling” Closer
Little dude did something really cool in his crib last night. Granted, it was the middle of the night, but still cool nonetheless. Elijah woke up and was fussing in his crib. I tried to get him back to sleep without picking him up, but it didn’t work. So what did Elijah do instead of going back to sleep? He pushed his bum up in the air (as I’ve seen him do a million times) and then proceeded to push up on his arms at the same time (as in a crawling stance). I’ve put him in this position several times and try to do so every day as part of his “mommy therapy”, but he has never gotten himself into this position by himself, so it was pretty awesome. I called Andy into Elijah’s room so he could see too. “You didn’t put him like that?” he asked. I shook my head. “No way!” Despite our exhaustion, we were mighty proud. I’m well aware that it may be awhile before we’re chasing a crawling Elijah around the house, but we’re one step closer and I’m convinced that he will get there.
Happy Daddy Day!
Happy Father’s Day to all you dads out there (I hope it was great)! I’d like to send a special thank you to Dennis (my dad), John (my dad-in-law) and Lloyd (my grandpa). I’m so blessed to have each of you in my life. So often dads are undervalued in our society and I want to make sure you all know how grateful I am for each of you. You’re all such great examples and have taught me that real men love and take care of their families. I am also so blessed to have a fantastic husband who makes my life so much easier, supports me, and makes life a joy. Elijah adores him...and for good reason! Thanks Andy and Thanks to all you daddies...Happy Daddy Day!
...I wrote the following section on Friday after our appointment, but didn’t finish it until now, so here it is...
Why does life have to be so complicated? (Our Neurology Appointment Recap)
I’m always amazed at how quickly doctor appointments pass by, how much they end up costing in relation to that short amount of time you spend with the doctor, and how much of a pain they are to plan and prepare for with an infant in tow. It feels like we walk in, wait, and walk out again. If you’ve ever seen a doctor, you are most likely aware of this feeling.
Dr. Friendly?
Overall, the appointment went well. Dr. Gloom wasn’t too gloomy, which was nice. It seems each time we see him, the less gloomy he gets. I’m still not so fond of his bedside manner (I’d describe it as sappy, fake empathy), but since he is a good doctor and since he has known Elijah since birth, I can overlook his demeanor. I don’t know, I think he’s growing on me. One of the first things he said to us was that he liked Elijah’s outfit. I liked that. Maybe there is hope for Dr. Gloom and me after all. :)
Tone and Head Size
Dr. Gloom seemed to be pleased with the things Elijah is doing. He wanted to see Elijah sit and stand and seemed happy with both. He checked Elijah’s tone and measured his head size. Andy and I realized after we left that Dr. Gloom didn’t say anything about Elijah’s tone, so we decided that must be a good thing. Dr. Gloom also charted Elijah’s head size and told us he predicted that his head size would level off a bit and stagnate (on the charts) and then eventually his head would grow and follow the curves on the graph, but would never make it within the “normal” range for head size. This is the same thing he told us last time and so I asked, “How do you know that? Is it because of other kids you’ve seen?” He just smirked at me and said, “Yeah.” I guess I don’t put much credence on this. For one, there is absolutely nothing we can do to make his head grow. And two, no one really knows what will happen (other than God, of course). There are always exceptions to the rule.
Positivity
On the positive side of the head growth issue, Dr. Gloom said, “Obviously his head is growing, or he wouldn’t be making the progress he is making.” I think that’s as close as Dr. Gloom has come to acknowledging the miracle that Elijah is. He also said, “What a happy guy!” and mentioned that Elijah’s smiles and laughs are a good sign about his cognitive function. For the most part, Dr. Gloom was positive. So, like I said, perhaps there is hope for Dr. Gloom and me after all.
No Seizures
This past week, I was afraid that I might have seen Elijah have a seizure, so we obviously discussed that with Dr. Gloom. The hard part about infantile spasms is that they are difficult to detect because they can look a lot like normal infant movement. I’ve been kind of down in the dumps lately, thinking that Elijah is possibly starting to have seizures again and just being overall frustrated with life. Anyway, upon discussing the incident in question with the doc, he didn’t think it was a seizure. He said the kind of seizure I was talking about (it looked like a startle) would occur much more often (Elijah did it just once). It also occurred while he was sleeping, which is incredibly rare. It would be of more concern if he had startles after waking up. I think the doc’s explanation put me at ease, but I’ll still be watching Elijah carefully. I guess we’ll always be watching him closely since kids with brain damage are more susceptible to seizures their entire life. Argh, we can never relax can we?
Nutrition Complications
We also discussed the correlation between Elijah’s head size and his weight and were kind of surprised to hear Dr. Gloom say that the two are completely separate issues and that we should treat them as such. This is the exact opposite that our pediatrician told us...that Elijah’s weight isn’t increasing as fast since his head size is small. Honestly, we’ve been kind of worried about his weight lately because our boy who was in the 95th percentile at two months is now closer to the 20th percentile. Those stupid growth charts are worrying us again! His weight really did seem to correlate with the size of his head, so this is where life gets confusing and complicated.
I’m still breastfeeding, so it’s hard to know how much milk Elijah is getting. I can tell you that it seems like he is eating constantly and seems to be healthy. He does great with eating his solids. He does seem pudgy, but I would definitely not call him fat, nor would I call him skinny. I guess my main concern is that it could be a brain issue since the brain literally affects everything. My other thought has been that since Elijah is unable to effectively use his hands at this point and doesn’t feed himself, maybe he isn’t eating as much as other children his age. Or perhaps he weighs less than his peers because he only eats what his parents feed him, which is all healthy fruits and veggies. It’s so hard to know!
So now the question is this...Should we start giving Elijah formula to supplement the milk he is getting? This makes me kind of sad since it’s not what I wanted to do. After fighting so hard to get breastfeeding established, I wanted to feed him for the first year since that’s what the AAP recommends. I know breast milk is supposed to be a brain booster too and Elijah needs all the help he can get.
To complicate matters even more, Elijah is allergic to milk (as you may recall) and seems to be reacting to the milk I drink. I have cut milk out from my diet and have tried to cut out as much dairy as I can. At this point, we don’t know what to do. It might be time to stop breastfeeding altogether since then we’d know how much Elijah was drinking and we wouldn’t have the dairy issue. We’ll be talking about all of this with our pediatrician tomorrow to get his advice. Pray that we’ll make the right decisions in regards to Elijah’s health and will be able to get the whole thing straightened out in our minds.
Another Doctor
I have one more thing to add about the neurology appointment...Dr. Gloom gave us a referral to see a doctor who specializes in pediatric rehabilitation medicine. He made the referral because of Elijah’s hands, so I’m speculating that Elijah might be getting hand splints. Again, it’s just speculation, but it should be helpful to see this new doctor since he is the Director of Rehabilitation at Gillette Children’s Hospital.
I’m starting to resign myself into thinking that we’ll be seeing a lot of specialists over the years for Elijah. I wish we could just live our lives without having to go to so many doctors appointments, but that’s just the way it is. We certainly want the best for Elijah and will do whatever is in our power to get him what he needs. The rest, well...we’ll have to leave that up to God (which is easier said than done!)
If you’re still reading this, thanks for sticking with me. You can’t say I didn’t warn you! :)
Just a quick note since I need to go to bed...We’re heading downtown to see Elijah’s neurologist tomorrow morning for his ten month follow-up (can you believe Elijah will be ten months this Saturday?!). Please pray that it goes well. Thanks!
I’m feeling a bit sorry for myself when I think about the fact that I’ve had three surgeries within a ten month amount of time (c-section, two leg surgeries). I’m kind of sick of surgeries and the recovery time that they entail, but I also know things could be much worse.
I’ll stop bellyaching, because the surgery went really well. The surgeon got the “abnormal” cells in the first sweep, so that was great. The nature of Mohs surgery is that they take a small section of the affected skin, look at it under a microscope while you wait, and then take more if necessary. So, getting it all the first time was the best possible outcome. Thank you so, so much for the prayers. I know that God was looking out for me and it helps that you all were thinking of me too. :)
In other news, Elijah got his glasses yesterday...and they’re already broken...seriously. They broke within a few hours. I don’t think it was anything we did to them and we’ve got new ones on the way. Hopefully it was just a fluke. He did look really cute in them and we have a duct tape version until we get his new frames. :)
A few things I’ve learned today....
-If you’re waiting for a wound on your body to be closed, by all means, avoid the urge to look at it.
-Having a surgery isn’t the best way to get a “day off.”
Anyway, I’ll stop feeling sorry for myself. Life is good. Thanks again for the prayers!
Teeth
Elijah is getting more teeth! This would explain why he absolutely refused to take his nap yesterday afternoon. It would also explain why I kept saying, “I’m grumpy today” last evening. It’s nice to know the reason for Elijah’s crankiness and it’s exciting to see that two teeth on the top are trying to make their way into the world.
Feet
Feet are amazing! Well, at least Elijah seems to think so. In just the past few days, he has been grabbing for his feet when lying on his back...and he has been successful in reaching them. While it may not seem like much, it is another one of those developmental milestones that will help him complete more milestones in the future. Our PT mentioned awhile back that a child playing with their feet helps them gain the muscles necessary to roll from their back to tummy. While Elijah has rolled from his back to his tummy, he doesn’t do it often and so I’m expecting more rolling from him now.
Hands
Grabbing his feet has become possible because Elijah seems to be becoming more aware of his hands and is using his arms a lot more than in the past. Whatever happened in his brain seems to have affected his arms more than his legs. He has loved to jump and stand for a long time, which is great because his legs are ultra-strong. He’ll even get his bum in the air and essentially crawl, but the problem is that he’ll have his head and arms basically immobile. It doesn’t make for good crawling when he’s essentially being a bulldozer.
The awesome thing is that Elijah has been using his arms a lot more than in the past. He can purposively turn on toys by batting at them, he’s reached forward while on his tummy to try to get a toy, and he’s doing better holding toys in his hands. He has shaken a rattle that was in his hand and he’s even banged the same rattle on the tray for his Bumbo seat. He is pushing up on his arms to get his upper body off of the floor and stays on his tummy for really long amounts of time. And I’ve saved the best part for last...he’s putting toys in his mouth! This is the most exciting thing for me since he should’ve have started to do this at around three to four months. He is still a bit uncoordinated in this effort, but I can tell he is trying to purposively do it and it isn’t just on accident. I know it’ll be some time before he effortlessly grabs something and puts it in his mouth, but he is definitely making progress in this regard and I’m so excited, not to mention thankful for his continued progress.
An Annoying Leg
The annoying leg is mine, not Elijah’s. His chubby little legs are perfect. :)
As you may recall, I had a surgery a few months back to remove a lesion on my leg. Unfortunately, I need to have another surgery. L The first surgery went well, but we discovered that there were still “abnormal” cells in my leg. The doctors kept telling me that I didn’t have cancer, but seemed concerned because it looked “abnormal” and were afraid that the bump might come back. While what I have is definitely not cancer, it does look weird enough and is growing fast enough that they want to make sure they got it all in case it became cancer in the future...(so that’s what “abnormal” means).
For those of you scientifically inclined, the term for the bump I had is a dermatofibroma, albeit an “abnormal” one. I’ve been told that these are pretty common in women in their twenties and they’re not sure what causes them. The surgery that will be performed on me is called Mohs surgery. It’s a more precise way to remove the abnormal cells, but it also takes a lot longer to perform because they remove it in small increments.
I would really appreciate the prayers for an uneventful, successful surgery. Please pray for wisdom for the surgeon and that they remove all of the cells completely. The surgery is this Thursday, June 5th at 8:40 in the morning and we’ve been told to expect it to take a half day. Needless to say, I am really not looking forward to it.
And Another Thing...
What’s the deal with doctors loving the word abnormal? I remember when Elijah was still in the hospital and we got the results from his EEG. I was sitting in the family waiting room and received a call on my cell phone from the beloved Dr. Gloom. He simply told me, “I’m sorry, the EEG is abnormal” and then he paused as if I was supposed to know what that meant. I appreciate compassionate, optimistic honesty when I’m getting medical news. I don’t want things glossed over, but I don’t want to be left in the dark either. Apparently that’s hard for doctors. I guess there is no good way to give bad news, so why not throw out the fuzzy term “abnormal.”
Okay, and One More Thing...
Writing this entry, it has struck me how every inch of our body is so important. In a child’s development, small things lead to big things. It’s kind of a snowball effect. It’s not like a child wakes up one morning and starts to walk. The walking happens because that child touched their toes and sat and stood and jumped, etc. - long before they took their first step. I know that God cares about every inch of us. This week I’d appreciate the continued prayers for Elijah’s development and if you wouldn’t mind, a small prayer for me too. :)
+236.jpg)
